Thomas is now 4 months old as of Sunday 17th Feb.
Boy it has been a long haul. He has been in intensive care for 4 months+.
I am sorry that it has been a while since my last email. I just couldn't face it.
He is not very well at the time I am writing this email. I have just come from his bedside and he was just given an extra dose of intravenous Morphine to help him calm down. The story goes....
Thomas loses control of his airways and it sends him into a bit of a crisis. The reasons he loses control of his airways are varied, it can be because some spit or secretions were blocking his trachy tube or sometimes he has pain, usually from wind or from passing a motion, sometimes he just doesn't like to be handled. Then his Pulmonary Pressures shoot up and make it very hard for his blood to move through his lungs and get oxygenated. He turns blue and has to be given higher pressures on the respirator and extra oxygen. There are all sorts of dials on the respirator which the doctors change constantly during these events, altering the PIP, PEEP, Rate, Flow and alarms on things like Tidal Volumes etc. It is very technical, they are very calm, it is nothing like those television shows where everyone is shouting and running everywhere.
It is very hard to watch as he is very distressed.
Yesterday we had a meeting with the doctors who told us that they were organising a Bronchoscope to see if there was a reason that Thomas' breathing was so difficult. It was done at about midday and I was actually present because they did the 'scope at Thomas' bed. I saw pictures of his trachea on the television screen. There were 3 lumps that were closing together when he breathed out which was making it very hard for him to breathe in again. The answer was to make a Trachy with a longer pipe that went past the lumps so that his trachea wouldn't be obstructed. After 2 goes the new Trachy is in. They had to do scopes each time to check that the length is right, the first time it was too long at 9.5cm and had to go back to the orthotic department to be made a bit shorter. The new trachy is 8cm long and the standard ones are only 6cm.
There have been 2 more crisises since then. The new trachy hasn't been the total answer.
The most recent Pulmonary Hypertensive Crisis started at about 4.20pm when he started to do a poo, then he began to relax at about 5.15pm when he was given some extra Morphine. Morphine is good for this because it helps his arteries relax. Thomas is having regular oral Morphine and Diazapam and Chloral to keep him relaxed and pain free but sometimes he needs a bit extra, like this afternoon.He has had a chest x-ray just now to see if there is anything in his chest that is a problem, he has a bit of redness around his gastrostomy site that has not improved for 24hrs. The doctors have ordered antibiotics for that. We are also concerned that he hasn't had a good poo for a while so he is getting some Coloxl drops to help with a little bit of constipation that can be seen on the x-ray. Also Thomas seems to have gained quite a bit of weight since his operation. He gained about 1.05kg in 10 days. He is a bit puffy after the surgery and there is some constipation but it does seem like a lot of weight to gain to me.
The surgery went really well. He has been swallowing most of his saliva and he has been keeping all of his milk down. The join was easy and the surgeons were thrilled that Thomas was back to being fed hourly within 5 days. The wound has healed nicely and there is very little bruising or swelling. Everyone is very happy about that.
It is very hard to sound positive about much of this. We are all doing our best to cope. Thankyou for your prayers.
Love to all of you from all of us,
Julie, Dean, Rowan and Thomas
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